"If you're going through hell, keep on moving, face that fire, walk right through it, you might get out before the devil even knows your there"- Rodney Atkins
While it is 10 pm and I should be sleeping my brain is in overdrive and I just took a bunch of pills so I need to be up for a little bit. What a perfect time for an update. I'm done saying that this will be a quick update. I think you know by now, they never are. I could go on forever it seems. Now, where to begin...
I'll start by letting you know that I got a 30 day extension at work. At the end of the 30 days I have to go through the whole doctors note routine again and we will go from there. Options are really slim as far as work goes. The bottom line is my "recovery" is not cooperating with the City's time line. For any one who knows about this disease that comes as no surprise. When does Lyme ever cooperate? Maybe never. Regardless, I am blessed to have another 30 days and I am really letting God take control. I am feeling more and more comfortable with the fact that I am giving up control. I'm letting Jesus take the wheel and as much as I like to drive, it's not so bad riding shotgun on this road trip. I think I am learning to sit back and relax.
Completely surprised but my sauna came a few weeks ago just like they said. After hearing some nightmare stories from some friends I wasn't convinced it could be here in less than week from when it was ordered but sure enough it was. Because I was finishing up my last week of antibiotics before my 2 month break I wasn't the first one to use it. That was ok I was just so excited to have it. My husband got the job of putting it together. It actually was a fairly quick process and with in just a few hours of it being delivered my husband climbed in and started to sweat. Now he has never used one and I had a feeling he was going to love it. I was right. I almost wonder if he loves the sauna more than me. Just kidding. Can I just say though, regardless of your health, if you can ever afford to buy one do it. The health benefits alone are worth it. It is just relaxing and makes you feel good, well unless you are killing bugs like me then sometimes not so good but I just highly recommend you look into them. I don't think you will regret it. As a side note the weight loss part is great, my husband is dropping pounds and loving it. So since stopping the antibiotics, starting the new medicine, and using the sauna I must admit it has been a little rougher than I thought. It is so hard to tell what is really going on. I have been really sick to my stomach the past few days and I am almost sure that that is the new medicine. Some of the other symptoms though are hard to tell. Is it a herx because the heat from the sauna is killing bugs, is it just part of detoxing, is it a relapse from no abx. I am not looking forward to starting the abx up again. I'm really scared of what type of herx I might have. There is not much more I can go through at home before I am sure I would end up in the ER. As any lyme person will tell you, you want to avoid that at all costs. It's usually not worth it. On the other hand though, if you think you are dying what choice do you have? I am not going to worry about and if I'm truly letting Jesus take the wheel, that means I'm letting Him drive down that road too.
Speaking of symptoms and herxing the heart issues have been fairly steady. Nothing super crazy but fairly consistent and enough to drive me nuts. I did an echo last week which was normal. (No surprise there) I did the stress test on the treadmill today. That test kicked my but and I had to come home and go to sleep. I did better than some of my other tests so that is a plus. However, in my book it was still an epic fail. I managed to get my heart rate up to 190 in about 7 minutes. The cardiologist said I did fine. I exceeded my maximum heart rate by a little doing moderate exercise. Not bad. Not bad? I'm WALKING up a hill and within 7 minutes my heart is maxed it, I'm weak in the knees and I can't breathe and that's not bad. Don't forget, this test was done with me on two different medications to control my heart rate. Needless to say I am still very frustrated by the whole thing. "Inappropriate Sinus Tach" seems to be the consensus but it still drives me nuts. I am just praying that when we get the lyme and co-infections in remission that this issue will resolve itself for the most part. The other crazy part of this is the shortness of breath. You really feel like you are crazy when you feel like it is very hard to breath, you can't talk in complete sentences and your o2 saturation is 100%. Just confuses me to no end. I just need to follow up with some blood work and we will go from there. I have been working on my "heart breathing". I need to do it more often but I always do it in the sauna. Focus on my breathing, then breathing through my heart, then happy thoughts...which leads me to the last thing for the night.
Once again some amazing things have happened in the last day or two that just remind me how blessed I am. I'm not ready to share all of the details but God is doing some things behind the scenes so to speak and my husband and I both believe that what has gone on in just the last 24 hours is part of God's way of letting us know we are on the right track. I think some big things are in store for us and I can't wait. It is so interesting how God's timing works as well. I had a very rough end to my work week last week with some frustrations over something I felt I deserved that I didn't get only to see someone else turnaround and get it. I literally had to leave the office before I said something I would regret. In my husbands usual style, he reminded me I was wasting time being mad over something I couldn't change. I knew he was right but, but, but, well I still wanted to be upset. Long story short, I got over it, and am so happy that things went the way they did. One, I found out that the other person did truly need what they asked for. Second, if that situation would have worked in my favor then it wouldn't have allowed God to bless us like He has. I'm still learning day by day. I'm still human and get upset and think life is unfair sometimes but in the end I'm realizing I can only see one small part of the picture. Someone else has a much better view...
In closing I just wanted to send out an extra big THANK YOU and hugs to all of my amazing friends for your support. You know who you are, and God has put you in my life for a reason. I am so thankful for each and everyone of you. Just in case you forgot...there are a couple of ways you can support me and family during this time. First you can pray for us. I don't underestimate the power of prayer and I could use all the prayers I can get. Second we would obviously accept your financial donations. You can do that from the blog by clicking on my "go fund me" link. You can buy some of my photography from my fototime link on my blog. Lastly you can watch the documentary "Under Our Skin" which is now available on Netflix to watch instantly. Thanks for following along. I'd love to hear from you. (Just so you know financially where we stand...we owe the doctors office roughly $1300 to catch up on my IV's we have done so far. If the 2 months off/on plan works and we are pretty much done after that then we still need to come up with about $5000. I just feel better letting you know what the costs really are.) Have a good night.
'
Tuesday, July 26, 2011
Thursday, July 14, 2011
Changes and Blessings
You might have noticed I changed the title and description of my blog. It has been something I have been thinking about for a little while and now just seemed like a perfect time. That doesn't mean that the content of my blog is really going to change. I just think it is important that I help myself break the my identity as only a lymie. Lyme disease is something I am I will probably think about everyday for the rest of my life. As long as this disease is active it will always be at the forefront of my mind. I just need to remind myself that I am not just a lymie though. I was a daughter, friend, wife, mom, fire inspector, etc...all before I could identify myself as a lymie. Because lyme affects every part of my life it's virtually impossible to separate it all. I hope you will still keep up with my journey.
The title of my blog isn't the only change that I have going on. After seeing my doc today it looks like some more changes are in my future.I updated my doc about my appointments with my llnd and the new cardiologist. He wasn't really happy about my new heart medicine. He feels that any of the heart meds are just a band aid to the the problem. I would have to agree but no one has given me a better solution to my heart problems. I still don't know the cause of my heart issues. It may be lyme or one of the co-infections or something else. At this point we just don't know and may never know. At this time I am not going to stop the new medication but I am going to try a form of meditation and see if it helps. Quite a while ago, in the midst of my heart trouble, I found something called the Institute of Heart Math. I wouldn't know how to explain it but I would say look it up. Anyways, my doc brought it up to me and explained a little about the science behind this meditation practice of heart centered breathing and focusing on something positive, something that makes me happy. Basically this practice is supposed to be able to change the way my heart is functioning. It certainly can't hurt. I am hoping to find my heart monitor so I can better track my heart rate and hopefully I will be able to see a noticeable difference.
Next we discussed the fact that I don't really feel like I have made much improvement in the past few months. We discussed my llnd's opinion on my need for detox. I told the doc that I am getting a sauna( should be here tomorrow YEAH!). He was very excited for me and I have heard from a few people that it made a big difference in how they felt so I am praying this will get me headed in the right direction. The doc put me on selenium, vit a, and zinc which all should be helpful. Then came the biggest change...we have decided to finish this week of IV antibiotics and that stop all antibiotics for 2 months. The plan is to go 2 months off, 2 months on, 2 months off, 2 months off and be done. I am so excited and nervous at the same time. He also has me starting diflucan during the months off. The way the doc explained it was the diflucan will paralyze the bugs and keep them from dumping toxins when I start the meds back up. I have to talk to some other lymies and see if they have done the diflucan and how it has worked. I didn't get to read like normal during my IV today because I ended up talking to two lymies. One lady I have seen before. She is has/is really sick but her lyme is actually in remission. She is just dealing with a bunch of other stuff from being sick so long. Then a new lymie that I have met on the computer came in. She just started her IV this week. It was nice to connect in person. the sad thing was the nurse told me 3 new patients start IV treatment for lyme next week. This disease is everywhere and can affect anybody. Just blows my mind. Anyways, I am excited to see how the next month or two goes. The change is perfect timing with the sauna coming in. Now I have more freedom to use it. I am going to try to get back to the gym also and just do whatever I can to help this detox process along. I will say I have been very consistent with my protein shake and I feel like I am starting to cut some of the other sugar out. That is a huge accomplishment for me. Yeah for that too.
The doctor did write a new note for work. The new note however says that there are going to be no changes to my work schedule for at least 3 months. I have to take this new note and meet with HR and the Chief tomorrow to renegotiate. I know I will be super nervous but I am really feeling like it is out of my hands. Essentially, even if I can increase how much I am working at the end of 3 months I won't be full time/full duty with no restrictions for at least 8 months. That my just be a deal breaker with the City. It is what it is and I am actually feeling comfortable with however things go. I'll try to update after my meeting tomorrow, so stay tuned. There may be bigger changes yet to come.
I wanted to end by sharing how blessed I am. Through this entire ordeal I have been blessed. I can look back at my darkest moments and see that I was blessed even when it didn't seem like it at the moment. I have started reading a book called Life Interrupted that has been a huge help. I just feel like God has been working behind the scenes and I am starting to get a glimpse of what may be coming. It certainly makes me excited. I am ready for some big changes. I still have my ups and downs. I still have some moments where I feel like this situation is hopeless but they seem to be brief and I just am starting to get excited about what the future holds. Can't wait to share more of this journey in the coming weeks. Keep the prayers coming. I can still use help in paying for medical bills. How sad that I would say for my birthday I would like help paying for my medical bills but it is true. You know where the donate button is. Here's to hoping you all are having a great summer and that life is treating you good.
The title of my blog isn't the only change that I have going on. After seeing my doc today it looks like some more changes are in my future.I updated my doc about my appointments with my llnd and the new cardiologist. He wasn't really happy about my new heart medicine. He feels that any of the heart meds are just a band aid to the the problem. I would have to agree but no one has given me a better solution to my heart problems. I still don't know the cause of my heart issues. It may be lyme or one of the co-infections or something else. At this point we just don't know and may never know. At this time I am not going to stop the new medication but I am going to try a form of meditation and see if it helps. Quite a while ago, in the midst of my heart trouble, I found something called the Institute of Heart Math. I wouldn't know how to explain it but I would say look it up. Anyways, my doc brought it up to me and explained a little about the science behind this meditation practice of heart centered breathing and focusing on something positive, something that makes me happy. Basically this practice is supposed to be able to change the way my heart is functioning. It certainly can't hurt. I am hoping to find my heart monitor so I can better track my heart rate and hopefully I will be able to see a noticeable difference.
Next we discussed the fact that I don't really feel like I have made much improvement in the past few months. We discussed my llnd's opinion on my need for detox. I told the doc that I am getting a sauna( should be here tomorrow YEAH!). He was very excited for me and I have heard from a few people that it made a big difference in how they felt so I am praying this will get me headed in the right direction. The doc put me on selenium, vit a, and zinc which all should be helpful. Then came the biggest change...we have decided to finish this week of IV antibiotics and that stop all antibiotics for 2 months. The plan is to go 2 months off, 2 months on, 2 months off, 2 months off and be done. I am so excited and nervous at the same time. He also has me starting diflucan during the months off. The way the doc explained it was the diflucan will paralyze the bugs and keep them from dumping toxins when I start the meds back up. I have to talk to some other lymies and see if they have done the diflucan and how it has worked. I didn't get to read like normal during my IV today because I ended up talking to two lymies. One lady I have seen before. She is has/is really sick but her lyme is actually in remission. She is just dealing with a bunch of other stuff from being sick so long. Then a new lymie that I have met on the computer came in. She just started her IV this week. It was nice to connect in person. the sad thing was the nurse told me 3 new patients start IV treatment for lyme next week. This disease is everywhere and can affect anybody. Just blows my mind. Anyways, I am excited to see how the next month or two goes. The change is perfect timing with the sauna coming in. Now I have more freedom to use it. I am going to try to get back to the gym also and just do whatever I can to help this detox process along. I will say I have been very consistent with my protein shake and I feel like I am starting to cut some of the other sugar out. That is a huge accomplishment for me. Yeah for that too.
The doctor did write a new note for work. The new note however says that there are going to be no changes to my work schedule for at least 3 months. I have to take this new note and meet with HR and the Chief tomorrow to renegotiate. I know I will be super nervous but I am really feeling like it is out of my hands. Essentially, even if I can increase how much I am working at the end of 3 months I won't be full time/full duty with no restrictions for at least 8 months. That my just be a deal breaker with the City. It is what it is and I am actually feeling comfortable with however things go. I'll try to update after my meeting tomorrow, so stay tuned. There may be bigger changes yet to come.
I wanted to end by sharing how blessed I am. Through this entire ordeal I have been blessed. I can look back at my darkest moments and see that I was blessed even when it didn't seem like it at the moment. I have started reading a book called Life Interrupted that has been a huge help. I just feel like God has been working behind the scenes and I am starting to get a glimpse of what may be coming. It certainly makes me excited. I am ready for some big changes. I still have my ups and downs. I still have some moments where I feel like this situation is hopeless but they seem to be brief and I just am starting to get excited about what the future holds. Can't wait to share more of this journey in the coming weeks. Keep the prayers coming. I can still use help in paying for medical bills. How sad that I would say for my birthday I would like help paying for my medical bills but it is true. You know where the donate button is. Here's to hoping you all are having a great summer and that life is treating you good.
Friday, July 8, 2011
Detox is the key
I guess it is about time I post an update. It has been a few weeks and I just haven't been able to get around to it. Well, there was a time or two I could have but it just so happened that my brain was not cooperating at that moment. So today I guess the stars have aligned and I feel well enough and have the time to complete this task. The one thing I am really bad about with my blog is going back and reading my past posts. I apologize in advance for repeating things a bunch of times but rereading my last few posts each time would just make me tired and then I would never get around to a new post. Of course I am now wondering where to begin...
Let me start with my appointment with my llnd. In the past I have usually done phone appointments because it was just easier. My doc just moved to NY and opened a new office in Connecticut so she isn't in her San Diego office as much (a week or two a month) and it is kind of a drive. This time though, I decided to go in and see her. If I am totally honest, I really wanted to meet her new puppy and office dog, Harry Winston. I believe he is a Kingsley and he is so cute. He is from Australia just like my doc. Back to the visit- it was good to see her in person. We typically go over current meds, supplements, and symptoms and figure out what to do. This time though I had to ask what supplements were crucial and what were negotiable or could I get a generic brand of. I am spending about 400 dollars a month on her supplements alone so if I could reduce that price it would helpful. We decided I could make a few changes but they may have cancelled each other out. I can stop taking the teasel root and the CogniCare but I added in a herbal detox formula. I also added in liquid glutathione but I haven't started it yet. My doc also gave me so diatamacous earth (I know I probably spelled it wrong). She had just gotten a big bag in that she was going to try so she sent me home with some for free. I haven't tried that yet either. Just taking it one thing at a time. I would really like to keep at least monthly appointments with her it $125 a visit. I just can't pull that off. My family is already trying to come up with $1000+ a month. I know for some people that is on the low end but in any case most people don't have that kind of extra money every month. Let alone the fact that we are still short over 50% of my income. I just squeeze her in every couple of months, which has worked so far but I do wish it could be more.
After reviewing all of my symptoms and everything it was decided that we are probably doing enough bug killing but not enough to help me detox. That of course would be why I started on the detox formula. We talked about my diet which I admitted sucks. She said, lets not focus on taking things away then. Lets focus on adding them in. First thing I was asked to do consistently is have a protein shake. So far, I have been fairly consistent. I also came up with a new recipe that I absolutely love. The real test of it will be later today because I just got my chocolate protein powder but here is what I have been doing. I love my coffee in the morning, even though it is decaf. I always have some type of mocha and I was usually buying them and not making them myself. I began wondering if I could make a protein mocha and lets just say it is my new favorite drink. One of the things I have mentioned before I am supposed to do is cut out sugar, which has been fairly impossible. In some of my research, including that primal diet my other doc suggested, I found out about heavy cream. It is a wonderful thing. Rich and creamy with no sugar. If I cut out the sugar as much as possible and reduce some of the carbs the fat is not supposed to be an issue. This gave me the idea for my iced protein mocha. I make extra strong decaf coffee especially if I don't have time to let it cool down and a few tablespoons of heavy cream and protein powder. Shake it up and pour it over ice. Now I get my protein and my coffee all at once. I will admit I had to finish my vanilla powder so I was adding some Hershey's which wasn't reducing the sugar. With the new chocolate whey protein powder I should be getting about 20 grams of protein and only 1 gram of sugar. I was originally also adding non fat plain greek yogurt but that bite of the yogurt wasn't so good. I highly encourage you to try it.
Sorry I got a little off topic. I tend to get long winded when I haven't updated in a while. Back to detox. I have looked at other things that are supposed to help with detox and long story short I am trying to get one of the Far Infrared Saunas. I know a few people who have the portable tent or tube type and they seem to work just fine. I am not saying I wouldn't do one of those but my parents are looking at the big ones. I mean it is a one person one but is made or cedar or hemlock, has music, and air purifier, and light therapy. It was perfect timing with our big county fair that was just here. There was a company there selling them and I am praying my parents are able to pull off getting me one. The cool thing is the whole family (except the kids) can use them and benefit. I llnd highly recommends them and so does my other doc. I have used on a couple times and they are amazing. So we will see. If you haven't read up on them I highly encourage you to do so. You can just look up FIR Saunas and you will find a bunch of great info. It actually looked like I might get one before the fair left town but in looking at them my dad became concerned over the mention of certain heart patients not using them. I tried to reassure him I was good to go but he wanted me to triple check. Since I was going to see this new cardiologist he said he wanted to wait and see what he said. So I checked and he didnt' care. So bottom line, bug killing will continue and the main focus will be detox. I do see my other doc this coming week and will get an update from him as well.
Sorry this post is so long but a lot has gone on and I want to catch up as best as I can. So I did go see a new cardiologist yesterday. This doc was recommended by a fellow lymie and is at least lyme friendly. Now have covered a lot of my heart stuff before but to recap as quick as I can...I have had a high resting heart rate for quite a while but it was never bothersome until the last 5 years or so. I started having major palpitations, tightness in my chest, and be short of breath after climbing one flight of stairs. We started a physical fitness program at work through a grant we got and it was during my first stress test that I knew there was a problem. I failed miserably, being short of breath and having my heart rate be at about 217 less then 7 minutes into walking up hill on the treadmill. Started seeing a cardiologist and wearing monitors and running tests. Must be inappropriate sinus tach. We decided to do nothing that first year. Next year and I get on the treadmill again only to have to stop about 6 minutes in with severe left sided chest pain and a heart rate of 272. You read right 272 beats per minute. I ended up getting an ambulance ride to the ER when a few hours later my heart rate was still 150. Saw an electrophysiologist (cardiac electrician) and again IST was the diagnosis. It won't kill me. Don't worry about it. Here is some beta blockers go on your way. The beta blockers have helped a little because my resting heart rate is below 100. I still have sporadic episodes where it jumps to over 200 and I'm not even on a treadmill or it goes from 95 to 140 after climbing one fight of stairs. Probably the most bothersome thing I have been having to deal with. Well knowing that heart failure is the second leading cause of death in lymies only behind suicide I wanted another opinion. I already had seen a different cardiologist who is the head at one of the local hospitals and he said I don't have lyme and this is all anxiety and depression. Obviously I didn't go see him anymore. The infectious disease doctor I say even said she believed I had Lyme Carditis which is the prime reason I needed to do the IV's. So I got this referral and was pleased with my appointment yesterday. This doc did admit that he only knew of Lyme causing heart blockage but he would look into it. Bottom line is, things are still not working as they should. My resting heart rate of 50 mg of Toprol is usually 88 but I don't think I have ever seen it go below 80. During one of my monitor tests the lowest it ever went when I believe I was sleeping was 68. The game plan this doc suggested was add a second heart medication. If that doesn't help I will add a third. Just I want more meds. I think this second one is still a beta blocker. The third one would be a calcium channel blocker. He also gave me a prescription for a med called Rhytmix or something along those lines that I can take during an episode. He told me to try and stay out of the ER ( I couldn't agree more) and just pop two of these pills during an episode where I can't control my heart rate. I back in about 2 weeks for an echocardiogram and the following week for another stress test. At least he is pursing trying to fix it. I do believe there is some possibility of a pace maker in my future. We will see how this goes.
I guess that is about it. I will be totally shocked if anyone has made to the end of this post but thanks if you have. Don't forget to help me cover the cost of my treatment by donating to fundraising site or buying some of photos. Thanks for the support. Prayers are always appreicated and comments are always welcome.
Let me start with my appointment with my llnd. In the past I have usually done phone appointments because it was just easier. My doc just moved to NY and opened a new office in Connecticut so she isn't in her San Diego office as much (a week or two a month) and it is kind of a drive. This time though, I decided to go in and see her. If I am totally honest, I really wanted to meet her new puppy and office dog, Harry Winston. I believe he is a Kingsley and he is so cute. He is from Australia just like my doc. Back to the visit- it was good to see her in person. We typically go over current meds, supplements, and symptoms and figure out what to do. This time though I had to ask what supplements were crucial and what were negotiable or could I get a generic brand of. I am spending about 400 dollars a month on her supplements alone so if I could reduce that price it would helpful. We decided I could make a few changes but they may have cancelled each other out. I can stop taking the teasel root and the CogniCare but I added in a herbal detox formula. I also added in liquid glutathione but I haven't started it yet. My doc also gave me so diatamacous earth (I know I probably spelled it wrong). She had just gotten a big bag in that she was going to try so she sent me home with some for free. I haven't tried that yet either. Just taking it one thing at a time. I would really like to keep at least monthly appointments with her it $125 a visit. I just can't pull that off. My family is already trying to come up with $1000+ a month. I know for some people that is on the low end but in any case most people don't have that kind of extra money every month. Let alone the fact that we are still short over 50% of my income. I just squeeze her in every couple of months, which has worked so far but I do wish it could be more.
After reviewing all of my symptoms and everything it was decided that we are probably doing enough bug killing but not enough to help me detox. That of course would be why I started on the detox formula. We talked about my diet which I admitted sucks. She said, lets not focus on taking things away then. Lets focus on adding them in. First thing I was asked to do consistently is have a protein shake. So far, I have been fairly consistent. I also came up with a new recipe that I absolutely love. The real test of it will be later today because I just got my chocolate protein powder but here is what I have been doing. I love my coffee in the morning, even though it is decaf. I always have some type of mocha and I was usually buying them and not making them myself. I began wondering if I could make a protein mocha and lets just say it is my new favorite drink. One of the things I have mentioned before I am supposed to do is cut out sugar, which has been fairly impossible. In some of my research, including that primal diet my other doc suggested, I found out about heavy cream. It is a wonderful thing. Rich and creamy with no sugar. If I cut out the sugar as much as possible and reduce some of the carbs the fat is not supposed to be an issue. This gave me the idea for my iced protein mocha. I make extra strong decaf coffee especially if I don't have time to let it cool down and a few tablespoons of heavy cream and protein powder. Shake it up and pour it over ice. Now I get my protein and my coffee all at once. I will admit I had to finish my vanilla powder so I was adding some Hershey's which wasn't reducing the sugar. With the new chocolate whey protein powder I should be getting about 20 grams of protein and only 1 gram of sugar. I was originally also adding non fat plain greek yogurt but that bite of the yogurt wasn't so good. I highly encourage you to try it.
Sorry I got a little off topic. I tend to get long winded when I haven't updated in a while. Back to detox. I have looked at other things that are supposed to help with detox and long story short I am trying to get one of the Far Infrared Saunas. I know a few people who have the portable tent or tube type and they seem to work just fine. I am not saying I wouldn't do one of those but my parents are looking at the big ones. I mean it is a one person one but is made or cedar or hemlock, has music, and air purifier, and light therapy. It was perfect timing with our big county fair that was just here. There was a company there selling them and I am praying my parents are able to pull off getting me one. The cool thing is the whole family (except the kids) can use them and benefit. I llnd highly recommends them and so does my other doc. I have used on a couple times and they are amazing. So we will see. If you haven't read up on them I highly encourage you to do so. You can just look up FIR Saunas and you will find a bunch of great info. It actually looked like I might get one before the fair left town but in looking at them my dad became concerned over the mention of certain heart patients not using them. I tried to reassure him I was good to go but he wanted me to triple check. Since I was going to see this new cardiologist he said he wanted to wait and see what he said. So I checked and he didnt' care. So bottom line, bug killing will continue and the main focus will be detox. I do see my other doc this coming week and will get an update from him as well.
Sorry this post is so long but a lot has gone on and I want to catch up as best as I can. So I did go see a new cardiologist yesterday. This doc was recommended by a fellow lymie and is at least lyme friendly. Now have covered a lot of my heart stuff before but to recap as quick as I can...I have had a high resting heart rate for quite a while but it was never bothersome until the last 5 years or so. I started having major palpitations, tightness in my chest, and be short of breath after climbing one flight of stairs. We started a physical fitness program at work through a grant we got and it was during my first stress test that I knew there was a problem. I failed miserably, being short of breath and having my heart rate be at about 217 less then 7 minutes into walking up hill on the treadmill. Started seeing a cardiologist and wearing monitors and running tests. Must be inappropriate sinus tach. We decided to do nothing that first year. Next year and I get on the treadmill again only to have to stop about 6 minutes in with severe left sided chest pain and a heart rate of 272. You read right 272 beats per minute. I ended up getting an ambulance ride to the ER when a few hours later my heart rate was still 150. Saw an electrophysiologist (cardiac electrician) and again IST was the diagnosis. It won't kill me. Don't worry about it. Here is some beta blockers go on your way. The beta blockers have helped a little because my resting heart rate is below 100. I still have sporadic episodes where it jumps to over 200 and I'm not even on a treadmill or it goes from 95 to 140 after climbing one fight of stairs. Probably the most bothersome thing I have been having to deal with. Well knowing that heart failure is the second leading cause of death in lymies only behind suicide I wanted another opinion. I already had seen a different cardiologist who is the head at one of the local hospitals and he said I don't have lyme and this is all anxiety and depression. Obviously I didn't go see him anymore. The infectious disease doctor I say even said she believed I had Lyme Carditis which is the prime reason I needed to do the IV's. So I got this referral and was pleased with my appointment yesterday. This doc did admit that he only knew of Lyme causing heart blockage but he would look into it. Bottom line is, things are still not working as they should. My resting heart rate of 50 mg of Toprol is usually 88 but I don't think I have ever seen it go below 80. During one of my monitor tests the lowest it ever went when I believe I was sleeping was 68. The game plan this doc suggested was add a second heart medication. If that doesn't help I will add a third. Just I want more meds. I think this second one is still a beta blocker. The third one would be a calcium channel blocker. He also gave me a prescription for a med called Rhytmix or something along those lines that I can take during an episode. He told me to try and stay out of the ER ( I couldn't agree more) and just pop two of these pills during an episode where I can't control my heart rate. I back in about 2 weeks for an echocardiogram and the following week for another stress test. At least he is pursing trying to fix it. I do believe there is some possibility of a pace maker in my future. We will see how this goes.
I guess that is about it. I will be totally shocked if anyone has made to the end of this post but thanks if you have. Don't forget to help me cover the cost of my treatment by donating to fundraising site or buying some of photos. Thanks for the support. Prayers are always appreicated and comments are always welcome.
Thursday, June 16, 2011
The Mirror Does Lie
"The Lord is Kind for ever and ever; the nations will perish from His land. You hear, O Lord, the desire of the afflicted; You encourage them, and You listen to their cry, defending the fatherless and the oppressed, in order that man, who is of the earth, may terrify no more." Psalm 10:16-18 NIV
I've decided to start my entries with a Bible verse, song, or some encouraging word. That way there is always something positive that you can take away. I have a lot of supporters who read this just to keep up with my journey but I also have a lot of Lymies that read this too. No matter who you are or what your circumstances are I hope you can find some comfort in the words I choose to share.
Moving on, things have been really rough lately. Not just physically but emotionally and mentally too. This disease lets nothing rest. I had the chance to see some friends I don't get to see but maybe once a year this past weekend. It was nice to have a chance to see them even if only for a little bit. They were eager to see me as they have been following along this journey. As seems to be the norm lately, I was told how great I look. I hear that a lot. I have even noticed myself, that I do "cleanup" pretty well. I'm sure people are just being nice but if there is any truth to what they say then I can't imagine how amazing I might look if I was well. The truth that has just been in my face this past week is that the mirror lies. My doctor says I look good and I must admit sometimes I agree. It just makes it difficult to even look at yourself and think I don't look sick. And if I don't look sick how on earth can I feel so bad.
Again I have faced some really tough days. Yesterday I actually had to call in sick to work. I woke up in pain but had every intention of pushing through like I have so many other days. Then out of the blue, I got dizzy and nauseous and my heart was not happy. I had a bad headache and backache and didn't get off the couch until dinner time. There were moments yesterday where I thought I could be dying. Everything in my body seemed to dysfunctioning (if that's even a word). It gets downright scary. I find myself either praying to God to get me through this with out panicking and to just let me fall asleep. Then there are very brief moments when I think God if this is what the rest of my life is going to be like take me please. Of course I don't want to die right now. I want to be here with my kids and husband. I know I have something else to accomplish. There are just times when you physically feel like you body is going to just start shutting down and your not sure what to do. I got up off the couch to go to bed and ended up in the kitchen with tears streaming down my face from the pain. God, it is not okay to be in this much pain. It's not. I can't handle anymore pain. I woke up this morning so obviously I handled it or God handled it for me I guess.
All of this once again raises concerns about the future. Will I ever be able to work again full time? Right now I don't see that in the near future. I don't know that I see that happening this year. That really leaves a lot to be discussed. Once again the financial strain that this has caused my family just adds to the stress. This stress is felt by my parents as they have taken us in and on multiple occasions had to come up with hundreds of dollars for treatment and doctors. I find myself maybe hiding the truth. I don't want to run to them every time I run out of a supplement or medication and don't have the money to pay for it. In a perfect world my supplements would be a standing order shipped every month with no questions asked. The money would always be there. As I have said before this scenario is true for almost every person with Lyme out there. Although there are some rich and famous people that have been afflicted with Lyme there stories just don't seem to be as bad. I have to believe that is largely in part due to the fact that can seek the meds and the treatments that the rest of us can only wish for. Maybe I am totally wrong but I am not the only that feels this a disease for the "rich". The insurance companies are not on your side. As a wife and a mother I struggle with putting myself first. So when I have to look at what the cost of treating my disease maybe taking away from children it is hard to put it first. My kids deserve so much more than they have gotten that it is hard to know that I have taken something away from them to try and fight this. It wears on your mind. I mean if there isn't a cure then am I just wasting time and money? I know that is not the case. I believe I may be able to get back to fairly normal life. I am not ready to give up but this just shows you the kind of head games you can get sucked into with this.
My one doc is out of town until the middle of July so I set up a regular appointment with him for when he returns. Although he usually pops his head in during my IV it is not a true appointment to reevaluate where we are going. I also need to schedule an appointment with my LLND. I guess I need to have the discussion of if I can't take or do everything what are the most important or beneficial things I can take or do? I have also scheduled an important with a cardiologist who is supposed to by Lyme knowledgeable or friendly. I just can't shake the concern that Lyme is damaging my heart in some way that we just haven't seen yet. What test have we not done? I mean all of the other cardiologist said my electrical issues were not life threatening and I didn't need to be concerned that my heart can go over 200. Although the cardiac specialist had never seen a heart rate as high as mine had gotten, 272 bpm, I should not worry. The only issue with a high rate like mine is that the heart muscle may wear out quicker than normal but again I don't have anything to worry about. Does that make sense to anybody? Plus the leading cause of Lyme related deaths, besides suicide, are cardiac issues. The few I have heard about don't seem to be people that got deathly ill and died without having a chance to undergo treatment. These are people, that had lyme for a long time, like me, and were in ongoing, long term treatment. Maybe even a few years into treatment they lost the fight. I just want to cover my bases.
I'm still working through this all as you can tell. This has certainly been the longest roller coaster ride I have ever been on. I question too how soon I can afford and should I get my kids tested. I don't want them to go through what I have been through. Part of my wants to stop my treatment and focus on them for a while. It's like the scenario on the plane of putting your oxygen mask on first. I can see it both ways. If I'm not better how can I support my children should they be diagnosed. Then again, if my treatment drags on for years, which it certainly looks like it is going too, how much damage could I be doing to them by not getting them treated right now. Lots to pray about and figure out.
Well I think I have thoroughly exhausted my brain for now. There is rest that is needed, plus errands to run and even a quick trip into work today and tomorrow. I hope everyone has a great fathers day weekend. Please let you dads and husbands (if they are fathers) know just how much they mean to you. To all of you, whose dad has passed, my heart goes out to you as this can always be a tough day. Thanks for all of the support.
I've decided to start my entries with a Bible verse, song, or some encouraging word. That way there is always something positive that you can take away. I have a lot of supporters who read this just to keep up with my journey but I also have a lot of Lymies that read this too. No matter who you are or what your circumstances are I hope you can find some comfort in the words I choose to share.
Moving on, things have been really rough lately. Not just physically but emotionally and mentally too. This disease lets nothing rest. I had the chance to see some friends I don't get to see but maybe once a year this past weekend. It was nice to have a chance to see them even if only for a little bit. They were eager to see me as they have been following along this journey. As seems to be the norm lately, I was told how great I look. I hear that a lot. I have even noticed myself, that I do "cleanup" pretty well. I'm sure people are just being nice but if there is any truth to what they say then I can't imagine how amazing I might look if I was well. The truth that has just been in my face this past week is that the mirror lies. My doctor says I look good and I must admit sometimes I agree. It just makes it difficult to even look at yourself and think I don't look sick. And if I don't look sick how on earth can I feel so bad.
Again I have faced some really tough days. Yesterday I actually had to call in sick to work. I woke up in pain but had every intention of pushing through like I have so many other days. Then out of the blue, I got dizzy and nauseous and my heart was not happy. I had a bad headache and backache and didn't get off the couch until dinner time. There were moments yesterday where I thought I could be dying. Everything in my body seemed to dysfunctioning (if that's even a word). It gets downright scary. I find myself either praying to God to get me through this with out panicking and to just let me fall asleep. Then there are very brief moments when I think God if this is what the rest of my life is going to be like take me please. Of course I don't want to die right now. I want to be here with my kids and husband. I know I have something else to accomplish. There are just times when you physically feel like you body is going to just start shutting down and your not sure what to do. I got up off the couch to go to bed and ended up in the kitchen with tears streaming down my face from the pain. God, it is not okay to be in this much pain. It's not. I can't handle anymore pain. I woke up this morning so obviously I handled it or God handled it for me I guess.
All of this once again raises concerns about the future. Will I ever be able to work again full time? Right now I don't see that in the near future. I don't know that I see that happening this year. That really leaves a lot to be discussed. Once again the financial strain that this has caused my family just adds to the stress. This stress is felt by my parents as they have taken us in and on multiple occasions had to come up with hundreds of dollars for treatment and doctors. I find myself maybe hiding the truth. I don't want to run to them every time I run out of a supplement or medication and don't have the money to pay for it. In a perfect world my supplements would be a standing order shipped every month with no questions asked. The money would always be there. As I have said before this scenario is true for almost every person with Lyme out there. Although there are some rich and famous people that have been afflicted with Lyme there stories just don't seem to be as bad. I have to believe that is largely in part due to the fact that can seek the meds and the treatments that the rest of us can only wish for. Maybe I am totally wrong but I am not the only that feels this a disease for the "rich". The insurance companies are not on your side. As a wife and a mother I struggle with putting myself first. So when I have to look at what the cost of treating my disease maybe taking away from children it is hard to put it first. My kids deserve so much more than they have gotten that it is hard to know that I have taken something away from them to try and fight this. It wears on your mind. I mean if there isn't a cure then am I just wasting time and money? I know that is not the case. I believe I may be able to get back to fairly normal life. I am not ready to give up but this just shows you the kind of head games you can get sucked into with this.
My one doc is out of town until the middle of July so I set up a regular appointment with him for when he returns. Although he usually pops his head in during my IV it is not a true appointment to reevaluate where we are going. I also need to schedule an appointment with my LLND. I guess I need to have the discussion of if I can't take or do everything what are the most important or beneficial things I can take or do? I have also scheduled an important with a cardiologist who is supposed to by Lyme knowledgeable or friendly. I just can't shake the concern that Lyme is damaging my heart in some way that we just haven't seen yet. What test have we not done? I mean all of the other cardiologist said my electrical issues were not life threatening and I didn't need to be concerned that my heart can go over 200. Although the cardiac specialist had never seen a heart rate as high as mine had gotten, 272 bpm, I should not worry. The only issue with a high rate like mine is that the heart muscle may wear out quicker than normal but again I don't have anything to worry about. Does that make sense to anybody? Plus the leading cause of Lyme related deaths, besides suicide, are cardiac issues. The few I have heard about don't seem to be people that got deathly ill and died without having a chance to undergo treatment. These are people, that had lyme for a long time, like me, and were in ongoing, long term treatment. Maybe even a few years into treatment they lost the fight. I just want to cover my bases.
I'm still working through this all as you can tell. This has certainly been the longest roller coaster ride I have ever been on. I question too how soon I can afford and should I get my kids tested. I don't want them to go through what I have been through. Part of my wants to stop my treatment and focus on them for a while. It's like the scenario on the plane of putting your oxygen mask on first. I can see it both ways. If I'm not better how can I support my children should they be diagnosed. Then again, if my treatment drags on for years, which it certainly looks like it is going too, how much damage could I be doing to them by not getting them treated right now. Lots to pray about and figure out.
Well I think I have thoroughly exhausted my brain for now. There is rest that is needed, plus errands to run and even a quick trip into work today and tomorrow. I hope everyone has a great fathers day weekend. Please let you dads and husbands (if they are fathers) know just how much they mean to you. To all of you, whose dad has passed, my heart goes out to you as this can always be a tough day. Thanks for all of the support.
Wednesday, June 8, 2011
Status Quo
Well another week of work has come to an end. I have once again survived. This week was a little tougher than the last. I did manage to have two days or so last week where my biggest issue was being tired. That was improvement from the previous few weeks. Unfortunately it didn't last long. Symptoms have ramped back up this week. The tiredness and fatigue never goes away. Some pain has come back. In fact today I have had a lot of the burning nerve pain migrating around. Yesterday I had a little tremor and twitching episode at work along with some weakness. I also had one little spot on the tip of my nose that was going numb on and off through out the day. This disease is so weird. I have had a lot of muscle aching back in my arms and the shortness of breath is back. I had to walk up a hill at a job site and got my butt kicked. So frustrating. I can't keep up on my supplements due to the money issue. I am hoping that once we get into me having a paycheck again we can get into a routine of being able to by supplements before they run out. I haven't had a chance to talk to the doctor about my labs with the heavy metal. Hopefully I can do that soon. Really, I just realized I have a lab slip for blood work that i have had for at least a month. I keep forgetting to go. Hate Lyme brain. Well anyways, I picked up something new today to try for detox. I also have inquired about the cost of HBOT but the place in San Diego I e-mailed hasn't gotten back to me. I hear it's really pricey but it is worth looking into. I just don't know if I can do it while I have my port in. I'm looking into it. I went and saw the eye doctor yesterday and my prescription has changed a little bit but the good news is there seems to be no damage from the Plaquenil I was taking. Not much else has changed. The symptoms just keep hanging in there and I'm not feeling much better. Some days has just knocked me out and put into bed as soon as I get home. The money and cost of my treatments is still a mess. There just isn't enough to cover it all but God has continued to provide and I am better off than a lot of other Lyme patients. We could still use your help though so if you are so inclined please check out the links to my photo site and purchase some of my work or go to my donation site and make a secure donation to help me cover my medical costs. I am hanging in there but could certainly still use your prayers. We have recently gained some ground in the Lyme community but we still have a long way to go in the political battle. Don't forget to watch the award winning documentary "Under Our Skin" as it is now available on demand for a lot of cable companies and also available for instant viewing on Netflix. I'll continue to keep you posted. I think there is a few other things that I wanted to say but at this point my brain just isn't cooperating.
Monday, May 30, 2011
I'm Nuclear
So I am still hear. 3 weeks down at a work and I am still alive. In some ways it feels barely alive but alive none the less. I have some good and some what interesting news from the doctors office. I got my heavy metal test back and the doctor was fairly happy with the results. I am only slightly high in 3 things. That is the good news. The interesting news has to do with the 3 things I am high in. One is aluminum. I guess the most common source of that is cookware. Deodorant is also a source. I didn't think we had aluminum cookware but I could be wrong. Guess I need to look into that. The other metals are really weird. I am high in uranium and something called gadolinium. Both of those are used in different nuclear applications. Could someone please tell me where I am getting exposure to anything nuclear? I am surprised I am not glowing in the dark. Hopefully the doctor can shed some more insight on that subject.
I have got to say that my symptoms have been really noticeable still. I have definitely had an increase in fatigue. I slept about 4 hours during the day about a week ago and I was in bed by 5:30 a couple of days this past week after work. I have been having a lot of headaches and sore throats. The pain, well there is not much to say except it is bad. I have had very few days in the past 3 weeks with no pain. I at least have it at night if I haven't had it earlier in the day. Some days it has been bad muscle aches, in my arms again which have been gone for quite a while. a lot of it is the bone and joint pain everywhere. This morning in just two fingers I am getting waves of joint pain that takes my breath away it is so intense. I've had some burning nerve pain again and the left side of my face starts going numb. It is so hard to figure out why the increase in some of this stuff again. I am still thinking it is from the new medication I am on. I guess the good news is I would take all of this to mean it is working and getting rid of some more lyme or co-infections. The frustrating part is of course how long will last or how much more do I have? The doctor said when I felt consistently good we would do the IV for two more months. Although I have made some improvements I don't consider this consistently better. In some ways it is hard to come up with a definition for that. I guess this is where good tracking of my symptoms comes in to play. Then I can hopefully look back and see a difference on paper.
I am also going to try and work harder at doing things that may help me feel better. I know you probably think...Well duh! Why wouldn't you be doing everything you can to feel better. As I have said before, this disease can become like a full time job. Dealing with the symptoms, getting enough rest, and taking all of your meds and supplements can take up all of your time. My husband just asked me the other day if I am doing everything I can to get better? I would like to think I am but I guess if I am totally honest about it I am not. I am going to make an even greater effort to do the things that may help me get better or at least feel better. That means drinking plenty of good water, eating lots of greens, doing my protein shakes, cutting the junk, working out at least twice a week, rebounding, dry brushing, and Epsom salt baths (on days I am not using my port), plenty of rest, buying my portable FIR sauna and using it on the days my port is not accessed, thinking positive, taking all my meds and supplements everyday no matter what...I think that covers almost all of it. Well I guess I am going to try and do all of that I better get off the computer! Have a great Memorial Day weekend. Thank you to everyone in the military, past and present, some of which have risked or given their life that we might be free. God Bless the USA!
I have got to say that my symptoms have been really noticeable still. I have definitely had an increase in fatigue. I slept about 4 hours during the day about a week ago and I was in bed by 5:30 a couple of days this past week after work. I have been having a lot of headaches and sore throats. The pain, well there is not much to say except it is bad. I have had very few days in the past 3 weeks with no pain. I at least have it at night if I haven't had it earlier in the day. Some days it has been bad muscle aches, in my arms again which have been gone for quite a while. a lot of it is the bone and joint pain everywhere. This morning in just two fingers I am getting waves of joint pain that takes my breath away it is so intense. I've had some burning nerve pain again and the left side of my face starts going numb. It is so hard to figure out why the increase in some of this stuff again. I am still thinking it is from the new medication I am on. I guess the good news is I would take all of this to mean it is working and getting rid of some more lyme or co-infections. The frustrating part is of course how long will last or how much more do I have? The doctor said when I felt consistently good we would do the IV for two more months. Although I have made some improvements I don't consider this consistently better. In some ways it is hard to come up with a definition for that. I guess this is where good tracking of my symptoms comes in to play. Then I can hopefully look back and see a difference on paper.
I am also going to try and work harder at doing things that may help me feel better. I know you probably think...Well duh! Why wouldn't you be doing everything you can to feel better. As I have said before, this disease can become like a full time job. Dealing with the symptoms, getting enough rest, and taking all of your meds and supplements can take up all of your time. My husband just asked me the other day if I am doing everything I can to get better? I would like to think I am but I guess if I am totally honest about it I am not. I am going to make an even greater effort to do the things that may help me get better or at least feel better. That means drinking plenty of good water, eating lots of greens, doing my protein shakes, cutting the junk, working out at least twice a week, rebounding, dry brushing, and Epsom salt baths (on days I am not using my port), plenty of rest, buying my portable FIR sauna and using it on the days my port is not accessed, thinking positive, taking all my meds and supplements everyday no matter what...I think that covers almost all of it. Well I guess I am going to try and do all of that I better get off the computer! Have a great Memorial Day weekend. Thank you to everyone in the military, past and present, some of which have risked or given their life that we might be free. God Bless the USA!
Monday, May 16, 2011
Going Backwards
What a first "week" back to work. I say "week" because I am only working three days but that is all I can handle right now. Actually, I am not even sure I can handle that. I guess it is not fair to judge how I am doing off of only 4 days but it was a lot tougher than I thought. First off, my Lyme cycle seems to have shown up early and has decided to stay late. I thought I was going to escape my first few days with no real problems. Wrong! The joint and bone pain that started back in over a week ago has managed to stick around. That is so frustrating. I was so excited to think that the Vitamin C was going to help eliminate it. Maybe it's the cyst buster I started taking causing a herx. Who knows for sure but I was just excited to think it was gone. I was definitely more tired than I thought I was going to be. When I get off I am ready to skip dinner and go straight to bed. Problem is it's only 3:30. I was just tired and in pain. I have also had a sore throat off and on. This morning I woke up with the sore throat and a headache. By noon I was feeling horrible. I just wanted to be in bed. I took some Advil and went to take a nap in my car. How sad it that? I have to go into the parking garage and take a nap in my car at lunch. I did make it through my day but I honestly didn't expect to be awake right now. The headache is gone for the most part but my back hurts, the bone pain is starting in, my muscles hurt...on and on the list goes. Other than having a major heart freak out today, so far I have had almost every symptom I have ever had. My face started to go numb for a few seconds, I had occasional burning nerve pain, ringing in the ears, burning sore eyes, brain fog, a twitch now and then. It was just a rough day. Unfortunately it wears me down mentally and emotionally. I am expecting the rest of this week to be rough. Maybe some of this has to do with my chelation for heavy metals as well. Regardless of the reason I get a two week break from my Tindamax (cyst buster) and hopefully my Lyme cycle will be done hear in the next few days so next week I can get an idea of how I do when I am feeling somewhat decent. It has just been a rough start. I have labs I have to do that I keep forgetting to do this week and I am hoping to hear a little something from the doctor on Thursday.
One good thing has been that my coworkers make me laugh. I have missed the joking around and it feels good to laugh a lot. On the flip side, just as I thought, things are changing at work. Roles, responsibilities, projects- a lot of it has yet to be revealed but I know for a fact things are changing. I also know that I was only approved to work this schedule for 60 days, calendar days. So basically by July 7th I am either going back to work full time, asking for more time to work a modified schedule, or well lets not go there. Right now it is really just going to be a lot of prayer and taking it one day at a time.
I don't want to go to bankrupt. I don't want to keep asking for money or help. I would like to move my family back into our own house. I can't sacrifice my health though, for any of that. The money or credit score or even having our own house again isn't going to mean anything if I am truly unable to function because my health has gone down the toilet because I was trying to do to much when I wasn't ready. This is a really tough position for me to be in. I could really use your prayers right now. Although I could always use prayers for healing or symptom relief and for finances, what I really need are prayers for guidance, direction, discernment. I need to know what God wants me to do. I need the right doors to open and the other doors to close so I can just know I am following God, not myself, my husband, the world. I am trying to keep a positive attitude. I am not sharing all of my negative thoughts on Facebook and am putting on a happy face as much as possible. This is my one place to just let it out. Thanks for keeping up on this crazy journey of mine. You have all been amazing. I am blessed by your kind words, your prayers, and your support with my treatment. Be back soon I'm sure.
One good thing has been that my coworkers make me laugh. I have missed the joking around and it feels good to laugh a lot. On the flip side, just as I thought, things are changing at work. Roles, responsibilities, projects- a lot of it has yet to be revealed but I know for a fact things are changing. I also know that I was only approved to work this schedule for 60 days, calendar days. So basically by July 7th I am either going back to work full time, asking for more time to work a modified schedule, or well lets not go there. Right now it is really just going to be a lot of prayer and taking it one day at a time.
I don't want to go to bankrupt. I don't want to keep asking for money or help. I would like to move my family back into our own house. I can't sacrifice my health though, for any of that. The money or credit score or even having our own house again isn't going to mean anything if I am truly unable to function because my health has gone down the toilet because I was trying to do to much when I wasn't ready. This is a really tough position for me to be in. I could really use your prayers right now. Although I could always use prayers for healing or symptom relief and for finances, what I really need are prayers for guidance, direction, discernment. I need to know what God wants me to do. I need the right doors to open and the other doors to close so I can just know I am following God, not myself, my husband, the world. I am trying to keep a positive attitude. I am not sharing all of my negative thoughts on Facebook and am putting on a happy face as much as possible. This is my one place to just let it out. Thanks for keeping up on this crazy journey of mine. You have all been amazing. I am blessed by your kind words, your prayers, and your support with my treatment. Be back soon I'm sure.
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